MOESM1 of Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

Noël, Esther; Dussol, Bertrand; Lacombe, Didier; Bedreddine, Najya; Fouilhoux, Alain; Ronco, Pierre; Genevaz, Delphine; Bekri, Soumeya; Hagège, Albert; Dupuis-Siméon, Frédérique; Derrien Ansquer, Valérie; Germain, Dominique; Lidove, Olivier

doi:10.6084/m9.figshare.11321468.v1

13023_2019_1254_MOESM1_ESM.docx (71.52 kB)

MOESM1 of Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

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posted on 2019-12-05, 05:29 authored by Esther Noël, Bertrand Dussol, Didier Lacombe, Najya Bedreddine, Alain Fouilhoux, Pierre Ronco, Delphine Genevaz, Soumeya Bekri, Albert Hagège, Frédérique Dupuis-Siméon, Valérie Derrien Ansquer, Dominique Germain, Olivier Lidove

Additional file 1: Table S1. An excerpt from the conceptual tree, illustrating the conceptual framework from which the questionnaire was derived. Table S2. Step II and Step III: patient characteristics. Table S3. PNQ Fabry (final version – 26 items) (French version). Table S4. Observed differences between the results for test and re-test rounds: reliability assessment – mean ratings. Table S5. Observation of the differences between the results for test and re-test rounds: reliability assessment – ratings as ‘Does not apply to me’

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Amicus Therapeutics

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Fabry disease Patient association Patient-reported outcome measure Patient self-reported tool Patient Needs Questionnaire Psychometric analysis Lysosomal disorders

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MOESM1 of Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

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